Thaila's guest blog compares what it was like to live with Crohn's in 2009 during her worst flare, to 2015, where she's happily in remission following surgery.
It's funny, even after nearly six years of having ostomy bags, I'm always learning something new from other people with stomas. It's awesome.
Thaila
Diagnosed in 2009
DAY 1
2009
I've got two sore arms from this month's blood test be
cause the GP had trouble finding the veins in EITHER arm. Apparently the fact that I have 'fine veins', alongside the fact that I've been extremely dehydrated recently, makes them turn invisible… or something.
2015
Just uploaded my latest Ostomonday video. It's funny, even after nearly six years of having ostomy bags, I'm always learning something new from other people with stomas. It's awesome. Got a blood test on Wednesday; can't believe it's been three months since the last one already. Well, as they say: time flies when you're having fun!
DAY 2
2009
I. Am. So. Tired. I'm just always exhausted and have zero energy. And being this skinny means I can never get comfortable in bed, as well as always being in pain… so I just can't sleep. And even if I do manage to get a few moments of sleep, I'm still exhausted -like I've never had any sleep at all! Grr. I remember a time when I wished I was skinny, but now that I have just dipped under the 6 stone mark, I've come to realise that it actually sucks. Everything is uncomfortable. Sitting, standing, laying down… nothing helps. Plus I look like a frickin' lollypop. No-one on the planet could find me attractive.
2015
Just finished my workout and I am PUMPED! I think I prefer high intensity interval training rather than long cardio sessions, just because you get SO much done in half the time! And you get a great sweat on too! Still a long way to go on the whole weight loss journey (yes, I still have that 'new bride post-wedding weight' to get rid of… the last weigh-in was about 11 stone - ouch!) but at least I'm on the right track!
DAY 3
2009
I wish my hip wouldn't hurt so much. The consultant reckons that the pain is due to my use of Prednisolone, as steroids can have an effect on the joints, or something? Gah, like there's not already enough side effects that joint problems have to be added to the already extensive list with both the steroids AND the 200mg Azathioprine?! Anyway, he's sending me back to my GP to get a referral to a rheumatologist. I hope it can get sorted out soon, seeing as I now have no feeling at the top of my thigh -like, I can't feel anything, even if I pinch the skin! Weird…
2015
Blood test all sorted for another three months, and picked up my prescription while I was there too. Still on 50mg of Azathioprine, which seems to be keeping me ticking over nicely (well, we'll make sure when we get my blood test results in a few days). Decided to have a nice walk around town while I was there, just because the sun was out. A bit of bonus exercise is always good, too!
DAY 4
2009
I think I'm going to try and stick to soups and 'soft food' for a while, as digestion seems to be some kind of big deal for me at the moment. And by big deal, I mean soooo painful. After every single meal. It sucks, because I was so glad to finally be back on food, after that AWFUL Modulen. I never, ever want to go back on that stuff. Glad that strapping up my thigh seems to help get rid of the pain in my hip a bit, though. Every cloud, and all that.
2015
Just got back from a meal out with friends! And I chose a relatively healthy option too (well, I was very tempted to go for the steak and chips, but eventually chose a healthy option)! I opted for a grilled herby chicken breast with salad, quinoa, edamame, avocado, tomato and an elderflower dressing. SO delicious! I can't wait until our next meal out with those guys! (Not just for the food, of course! It was nice to see them too!)
DAY 5
2009
My GP reckons that my consultant is wrong about the pain in my hip being joint-related. He said he was chatting to his other GP friend and they concluded that it could be something called a Psoas abscess? Anyway, he's referring me back to the consultant again to say I need further investigation. I wonder what a Psoas Abscess is. Screw this, I'm going to bed. Yes, it's 6:00pm. No, I don't care.
2015
FINALLY! I finally have feeling along the entire top of my thigh! After, what, six years of it slowly regaining sensation?! Crazy! Actually, that reminds me. I had an email from someone whose experience has been quite similar to mine -she also had a perforated colon (though I don't know if her perforated colon led to a Psoas abscess like mine did…) but she did say that she's found my videos so helpful during her recovery, which is so nice to hear! It's so great to see more and more people talk about their experiences in an honest and open way, too. Back when I was going through it all, there wasn't much out there in the way of young people opening up online. Or anyone opening up online, whatever age! And if I had questions, there wasn't really anyone to talk to about it -not anyone who was experiencing the same thing as me, at least. But now, it's amazing! Take a look at the GetYourBellyOut campaign for example; everyone is so supportive of each other. And the stories that Crohn's & Colitis UK share on their Facebook page are so inspiring; it's so nice to see friendships form through it too. Anyway, gotta dash -off to the cinema tonight!
